Severe ME Day of Understanding and Remembrance: Aug. 8, 2017

Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...

​

Once again, August 8 is important for those of us with ME, especially for those whose illness is quite severe. I've seen Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance in a few places with the words in a different order. I'm not sure what the original was.

I do know that whatever order the words fall into, this is a day to honor and turn the spotlight toward those who of necessity live in the dark, in the quiet, in isolation and desperation.

Sophia Mirza was a young woman who had severe ME. She died in 2005 at only 32 years of age. Her birthday was August 8. That day has become our date for our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance. We remember Sophia, and all those others who are oppressed by severe ME.

I know that healthy people have trouble grasping how debilitating my condition has been for me over the years. It seems like it must surely be ... a little exaggerated, at the very least. Sorry. No exaggeration. Yet, my health is quite robust compared to that of someone suffering from severe ME.

You can't go and see most of these invalids. They need such quiet, such dim lighting, such absence of stimulation that you'd hurt them if people showed up to observe them. And they are so invisible, most people wouldn't know where to find a severe ME sufferer to begin with.

So the rest of us who've had a taste of what the living death can be like need to be their voices. We need to describe what is going on behind the silent, closed doors. We need to talk about their suffering which, though silent, is screaming through their veins every waking hour or every day. And for some with severe ME, sleep of any kind is hard to come by and there are way too many long unbroken hours of muted screaming into the void.

I did a little of that some years ago. I will tell you that it is terrifying, and the longer it goes on, the more soul-destroying it is. And in many cases for our severely ill, it has already gone on for years, even decades.

We have been seeing some research, some movies, some books, some air time on TV recently. It's wonderful. It's been such a long time coming and we need so much more of it! But that only makes it that much more wonderful for a community that has been mocked and dismissed and sidelined for decades.

We are hoping to see more, to see greater change, to see more people with know-how and money and brains and compassion to come along side us. We want more people to see what is happening to our severely ill. It matters and something must be done about it.

Those of us who are not so desperately ill take up our pens, type on our keyboards, put our messages to music or on canvas, talk to people that we know, point to other people's writing about severe ME. We know we can't fix things on our own, we need help to do that. So we do what we can to raise awareness. We bang our little drums, we flash our emergency lights, we yell as loud as we can. And we will keep doing it till something finally changes. Especially for our severely ill.

We try to stir up the healthy to care about and take action for those wrapped in blankets or lying on a bare floor because they can't tolerate the materials. We talk about the ones who can't sleep and the ones who can't stay awake. We brood about the ones in great physical pain and those whose muscles are atrophying with each passing day.

We worry about those who need to be fed because they can't feed themselves, and about those with no one to bring them food — so mostly they just don't eat. And then there are those whose list of foods their bodies can tolerate is so limited that they are wasting away from malnutrition.

Some of our severely ill are shut up in a darkened room all day, every day. They will be the lucky ones.

Then there are those who are on the street because they no longer have a home or their bodies are too sensitive to the chemicals or molds inside the home they had. Or maybe they've been locked in a psych ward because they are supposedly mentally ill, and are dangerously losing ground because the "treatment" is completely wrong and is making them sicker.

And we worry — who will speak up for all of them? Who will stand by their side for the long term necessary with such a chronic illness? Who will make sure they get a needed IV, or the medications that help them to keep going? And the supplements that help some of them — where will these come from, and who will procure them? Who will feed them and bathe them and be their go-between with the rest of the world?

We hear nonsense about if something is really important to you that you will find a way. If you are a good enough person or a righteous enough person, you will be able to make things happen. If something is important enough and you work hard enough, you will get it. Or I love this one — if it's meant to be you will have it.

This is all such rot and it makes me livid. Because if any of these were true, most of us would have everything we need. I know I for one would have had nothing, if getting it depended on my being able to do something about it.

I had to have my food cut up for me, I had to be fed, I had to be dressed. I couldn't think straight or carry on conversations. Phone calls need to be made? Bills had to be paid? Money had to be gotten? Somebody else had to do all of that.

I needed someone else to keep my household running and keep me and mine safe. If it had been left to me ... we would all have done completely without anything.

All a sick person needs to do is be good enough and try hard enough. Right?

Wrong. I know wonderful people who have given their all, and yet are too sick to do more than breathe, while flattened in their beds.

What if trying their hardest DOESN'T bring what they need? Then they just do without. Do without friends. Do without decent food and supplements and meds. Do without decent clothes and blankets and shelter. Do without hope.

We are not defined by our illness, and we need to remember that and remind each other of this. Our limitations and disabilities are not the sum total of who we are. And though our attempts and successes may be small they are most assuredly not trivial. What weighs us down, what binds our hands, blinds our vision, and gags our voices — this is all such a Herculean burden that it is no wonder some of us can do no more than breathe in and out.

What we can't do doesn't tell you a thing about who we really are. Every one of these silent sick people are treasures. And those of us with ME who are well enough to speak or act will continue to do all we can to protect and preserve them and bring them to light as people in need of urgent care and intervention.

We strive with all our typing and talking to enable people to understand the horror of this disease so long dismissed. We ask that you will remember our severely ill brothers and sisters with ME, on August 8 and every day.

Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

And don't forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising's Donate page by clicking the button below.

Thankyou for writing this. Although I'm having a very hard time I know there are people out there who are still doing much worse. I feel for them. Thankyou for writing about their situation, it was really written well.

Thankyou for writing this. Although I'm having a very hard time I know there are people out there who are still doing much worse. I feel for them. Thankyou for writing about their situation, it was really written well.

Today, August 8, is Severe ME Day. Myalgic Encephalomyelitis (ME) is a systemic neuroimmune condition characterized by post-exertional malaise (a severe worsening of symptoms after even minimal exertion).The effects of ME are devastating enough to leave 25% of patients housebound or bedbound. For moderate to severe patients, living with ME is like living with late-stage cancer or congestive heart failure for decades. An estimated 836,00 to 2.5 million Americans have ME. 75-85% of them are women.